Weekly Updates! - September 6, 2024

Weekly Updates! - September 6, 2024

Hello everyone! I hope you’re having a great week! Here are some TBRS Community updates from this week:

• EVENT: Have a Round for Tatton Brown! - Sept 21, 2024

• • • Have a Round for Tatton Brown is a fundraiser event in support of the TBRS Community, hosted by Zoe and Michael Wisnoski. This event is back for its second year!
    • Event details:
      • Date: Saturday, September 21, 2024
      • Location: France 44 in Minneapolis, MN, USA
      • The event will include wine tasting, cocktail tasting, appetizers, and a silent auction!
    • Click here to sign up!

• Thanks to our Community for your help with registry testing!

• • • We have been working to update our Patient Registry for some time now
      • Some of these changes include using standardized surveys, including Heyn Sproul Jackson Syndrome, and translating the Registry into other languages.
      • We are excited to say that we have moved into the testing phase for these changes!
    • Thank you to the volunteers who have diligently completed and given feedback on the new Patient Registry! With your help, we will have a more comprehensive and accessible Patient Registry platform soon!

• REMINDER: Opportunities to donate to the Biorepository

• • • With the growing interest in our samples, we will be needing more patient donations soon!
      • The TBRS Biorepository is a collection of patient blood samples and other tissues that are readily accessible for research.
    • Below are the dates for upcoming rare disease conferences where you can donate to the Biorepository:
      • September 27-28 - Atlanta, GA
      • September 29 - Kansas City, MO
      • November 11 - Nashville, TN
      • December 5-6 - Los Angeles, CA
    • If you are interested in donating to the TBRS Biorepository at any of these locations, please contact kit@tbrsyndrome.org.

Thank you, and I hope you have a great weekend!Kit Church, CARE Manager